Thursday, January 29, 2015

New rheumatologist = amazing

I'm feeling a bit like this handsome guy today. This morning was my appointment with my new rheumatologist. I'm happy to say that it went really well.

First of all, they actually had comfortable seating. I thought that was important to me before, but oh man the torn labrum makes it a necessity even more. They also had a wall full of pamphlets from the Arthritis Foundation on just about every autoimmune arthritis type.

The exam room was gorgeous. Two whole walls of windows and beautiful furnishings. The exam bed was an older one, but a really good one.

I spent a good bit of time in the exam room before my new doc came in, but I was okay with that since it gave me time to study up on my bones...

And them muscle butts.

Doc came in. She and I talked a bit about what was going on with me currently first - bad joints, rashes, Raynaud's, etc. We went over what is hard for me to do - and what I really like to do but have a hard time with like cook or play with our piggies. I mentioned my situation growing up - didn't mention abuse per se but mentioned neglect. 

She asked how my anxiety and depression were doing, which was good but also caught me off guard. I hadn't really thought about it. My anxiety is definitely getting better. The depression is still there in reality but far lesser than before. Mentally I feel like I'm in a good place.

Thank you serotonin!
We talked a bit about my frustrations with my current rheumy situation. I mentioned how frustrating it is to have a doc use step/fail first therapy and treating me for general JA instead of going right for the meds to help SJIA. She agreed and was frustrated for me. I went over a history of my meds.

We talked about how her office operates. It's her, her nurse (whom she gives more duties than normal RNs), and her assistant - that's it! No talking to 20 people to get an answer. No chances of my paperwork being lost - especially because she sits down and does it right away! Her medical philosophy is all about being a partner in care and getting you to YOUR goals. She's very into engaged patients, which makes me so excited.

We discussed remission as the goal. It may not be possible - I'll be real there - but I'm excited to try. She also brought up new ideas on when a drug is failing a patient (her words even!!). I went over drugs I would consider trying again like methotrexate and those I do not want to do again (ARAVA YOU JERK).

She gave me a nice and thorough physical exam, though she stayed away from checking ROM on my hips thank goodness.

Then her nurse came in and met with me as doc was filling out my FMLA paperwork. We talked about labs and resources they have like their amazing occupational therapy department.

I have labs at the end of next week and we can look at how to proceed. One of her goals is to get me off any meds I don't need - part of the remission goal is testing that when things are better. I've already basically stopped taking my muscle relaxer each night. It helps but makes me so groggy that I have a hard time getting up. Instead I'll only take them when my back or other muscular issues are acting up.

One of the reasons I like this doc, too, is that she is active with our local Arthritis Foundation chapter. I happened to meet with a couple of AF people today, too, to get an update on federal and state goals for the year. It was interesting and eye opening. I'm ready to do more with them on a local level, so having them touch base was nice.

They also told me that the Arthritis Introspective Conference this year is in Milwaukee, just a short drive away! I'm going to look at what I can do to be more involved there this year as well. So hey, come hang out!

You can't see super well but all three piggies are in here!
Right now I'm ready for a night filled with delicious pizza and cute guinea pigs!

Sunday, January 25, 2015

New rheumatologist: What would you bring up?

It's not that I hate my old doc, but it's very obvious that the office is too busy to really dedicate time to so many patients. It also shows in their lack of attention to detail (refill issues, lab results taking a week to get back to me instead of the three days, etc). They're very sweet people and I love that the rheumy teaches, but the teaching is getting in the way of my care at this point. I gotta do what's best for me and peace out.

I see my new rheumy Thursday morning which means it's time for me to start obsessing as I usually do before appointments, about what I'm going to say in the short time I see the doc. This time, I'm scheduled for a whole hour, which will be longer than I've sat with one of my docs in a long time.

I obviously am going to have to bring up the fact that I don't have any records from my childhood, since I didn't get to see doctors. I want to bring up frustrations with my current rheumy team and the fact that they're not treating me for SJIA/Still's. I want to start talking about other meds. Cimzia isn't awful, but I've also not done my shot for like a month and not felt any real difference other than not feeling quite as flu-like (I'll do it tonight).

I'm sure that part of the issue with that too though is the torn labrum. I would think it is distracting my body more, even with the pain lesser than it was a month ago when this all started. It still is limiting my activity and causing pain. My quality of life is still lesser than it should be. Perhaps I can discuss surgery and thoughts about that with the new doc. Even though it's feeling better, the fact that it's still causing problems AND has always been an awful joint for me makes me feel like surgery would be best.

I also am going to start working on getting my records so that I can go through and correct them... and so I can have my x-rays and scans for fun decorations.

I have problems.

But seriously though, how cool is it to have pictures essentially of your insides, of what makes you move and function?


What are some things that you've brought up to new specialists? What is the most important to bring up in your short time? Is listing your expectations a good idea, or too bossy?

Friday, January 23, 2015

Frustrations with my current rheumatologist

I'm a little confused here...

If every time I see you we discuss how I have Systemic JIA/Still's, why do y'all have me listed as having polyarticular? My SJIA is definitely polyarticular in nature, but um...

Do y'all not listen at all to your patient? And to the (limited) records? And symptoms?

I just, um...

I hope I really like this new rheumy I'll be seeing because I honestly don't want to go back to this office.

Before I got more into the empowered patient movement, I would probably have let this slide, but honestly not cool.

My previous rheumatologist to these guys put many things in my record inaccurately.

Does anyone know what to do to remedy all this?

Thursday, January 22, 2015

3 weeks into the new job and life updates

And I'm hooked.

I can use my skill for real things. I work with doctors who LISTEN not just hear what you have to say. Granted, for treating kids you kinda have to? Still though.

I have gotten through two of my three monthly meetings intact. I also have met probably 85 people out of out 400ish people unit... and others that don't count towards that total. I work somewhere where my organizational skills are appreciated too, and that's awesome.

It's been a busy couple of weeks, and I'm glad to say that things will start to slightly slow down soon.

I hope.

Next Thursday I see another rheumatologist for her thoughts. She's treated Still's before and was puzzled why I'm on TNF drugs instead of kineret, actemra, or others. I'm glad someone else was as confused about that as I was! Am? I hope to report back good things! The welcome packet the team sent me for her clinic is already way better than anything I've gotten from my current place.

That night I also am getting together with some of my fabulous former coworkers who I'm missing like crazy.

My hip pain has lessened to the point where I don't have to take the few precious narcotics I have every day anymore. We upped my NSAID so that's helping too. I'm also realizing how out of it taking my flexeril makes me, so I'm stopping taking that at bedtime at least during the week. If I can sleep in and need to have it to sleep or for my spasms, I'll use it. This will also help me see how well my lyrica is working for my fibro pain/sleep.

Hopefully I'll hear back the week of Feb 2nd from the surgeon. While the pain has lessened, it's not gone and it's definitely still restricting my range of motion. I can only hope dude thinks I'm a good candidate for the surgery.

I've got more books to read, so you'll start seeing more reviews posted in the coming months.

Monday, January 19, 2015

Book Review: When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen & Joshua Kosowsky

I first learned about Dr. Leana Wen from Stanford's Medicine X conference. She's presented to their courses as well on the power of the patient narrative:

So when I found this book written by Leana and Dr. Kosowsky, I knew I needed to pick it up.

The goal of this book is to help educate patients on the questions to ask and things to do to avoid being misdiagnosed, unnecessary tests, and unneeded hospital stays.

One of the biggest issues in the last decade, according to Wen & Kosowsky, is the turn to the cookbook approach to health care. You have symptoms A, B, and C, so you must have disease AB. The era we're in now with this approach is what they refer to as the Era of Depersonalized Diagnosis (the previous eras were Spiritual Healing & Magical Thinking, Early Empiricism & Disease Classification, and the Golden Age of Medical Diagnosis).

This cookbook approach to health care does not work for most. An example was given of a middle aged guy who came to the ER with chest pain... who had also been moving furniture recently. They kept him in the hospital overnight to run tests despite the fact that his practitioners didn't think he had a heart attack and earlier tests basically showed that he had not.

The best way to fix these types of mistakes? By getting back to the importance of the doctor-patient relationship, of course!

When you go to the ER (or a doctor, but especially in the ER), they essentially want to find your chief complaint and narrow that down to 1-2 words (i.e., chest pain, hip pain, etc). These can often be paired up with pathways, or basically recipes that the doctors have been told to/feel they have to follow to eliminate big picture issues (i.e., heart attack, etc). Oftentimes, the correct chief complaint isn't entered because someone hears something like chest pain and assumes that is the chief complaint and then follows the pathway. As a patient, you really have to make sure that you assert yourself, which also means asking why docs may be reacting to your story in such a way.

One of the things I loved most about this book was the different sections. There was one about patient stories, and those stories were used throughout the book as examples. There was another about a crash course on diagnosis, a prescription for patients, and another on the pillars to a better diagnosis. Every single section recapped information at the end, which is always great for those of us who have some memory or brain fog issues.

A big takeaway from this book is the advice Drs. Wen & Kosowsky give to patients. There is everything in here, from making sure doctors hear you (and what to do if they don't) to making sure you have a working diagnosis before you leave to bringing up what you are most worried about to putting your symptoms in the context of YOUR life. Saying your hands hurt and lock up is one thing, but talking about how hard it is to live your day to day live because you can't bathroom/cook/take care of your pets or kids is another.

The eight pillars to a better diagnosis are: tell your whole story, assert yourself in the doctors' thought process, participate in your physical exam, make the differential diagnosis together, partner for the decision making process, apply tests rationally, use common sense to confirm the working diagnosis, and integrate the diagnosis into the healing process.

All in all, this book helps to get patients engaged and involved in their own health care - something that has been missing for some time and is also sorely needed. Drs. Wen & Kosowsky even point out that patients often feel as though it isn't our place to tell the educated white coats they've got something wrong - or perhaps worse, to question them.

It's time that we start becoming active and involved with our bodies, from what we eat to how we exercise to what we perceive as normal (regarding looks, etc) to the health care we receive. If you're looking for a book to help you get started on that, look no further. This book is one of the better ones I've been able to read in a long while - go pick it up!

Friday, January 16, 2015

A response to Rand Paul and the GOP threatening to raid SSDI

Have you read Rand Paul's recent comments? Just take a minute and look them over...
“What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting your disability check. Over half of the people on disability are either anxious or their back hurts. Join the club,” he added. “Who doesn’t get up a little anxious for work every day and their back hurts. Everybody over 40 has a little back pain.”
Guess what? Sometimes I have the energy to look nice. Sometimes I HAVE to look nice for things when I don't feel like doing so. Sometimes I just wake up like this.

Don't judge me on how I look sir, because I'm pretty sure you wouldn't want the tables turned. You definitely don't look like a president to me, but like someone who became powerful riding daddy's coattails and is trying to stay relevant.
Republicans haven't said what they'll do, but [Rep. Sam] Johnson [Texas Republican] has previously sponsored legislation that increases punishments for disability fraud, which he characterizes as rampant. The Government Accountability Office estimated in 2013 that about 1 percent of benefits were fraudulently paid to people who could work. In its latest annual report, the Social Security Administration says 14 percent of disability beneficiaries suffered "mood disorders" and 27.7 percent had diseases of the musculoskeletal system or connective tissue, which would include back pain.
Hey guess what is included in that 27.7%? I'm guessing the rheumatic diseases. Would you like to know how fun it is to hobble into the bathroom on mornings I'm in extra pain? How about how terrifying it is to have a bowel movement in the morning when I haven't taken my meds yet and my hands don't really work?

My hands aren't this bumpy but you get the idea
Or how I'm impacted by not being able to be intimate with my husband as often as I'd like because I can't move the right ways? How about what happens when I can't wear clothing because my fibro is killing me, and how even sitting on my couch is killer? How I can't even hug someone or hold hands because it hurts so badly?

Or maybe you'd like to have multiple deformities with surgeries every couple of years to try to fix things?

Also, mental illness can be very crippling, so don't discount that. You can't do anything, and it starts to impact your physical well being, from issues stemming from lack of self care (lack of hygiene making you sick) to very real and meaningful physical pain. Don't you dare take away the few resources available for those suffering from severe mental illness.

I WILL move to Canada you guys.

Also, more maple syrup there than Wisconsin. Go figure.
Paul's office said the comments were taken out of context, and forwarded the following statement from the senator on Wednesday afternoon: 
"We absolutely should take care of those truly in need of help. But the system is broken, and when people can game the system, they are stealing from those who are truly disabled and won't receive the care and aid they need," Paul said.
Sure they were, Rand.

Here's the deal. Are there people who scam the SSDI system? Definitely. You know what you need to do to combat this? Put more funding in the fraud department who can investigate the claims against those who may be committing fraud. Here in Wisconsin, there is something like 3 people in the fraud office. They will NEVER get through all the tips to investigate people.

There are people who rightfully deserve SSDI. Do NOT punish them because of the few bad eggs.

Thursday, January 15, 2015

MRI Fun, Part Deux

So it took my rheumatologist A WEEK to get back to me with my MRI results... Any test in the health system I use (and now work at, so I know what's up too) is supposed to be processed and presented to the patient within three days. Not that it ever happens with this doc...

That's beside the point (kind of at least).

Anyway, I do NOT have avascular necrosis (AVN). Hooray!

I do, though, have a tear in my labrum.

This explains why wearing underwear hurts like a bitttcchhhhh.

She gave me the choice between PT and surgery. Seeing as I work with a couple of sports med docs over here in peds, I opted to ask for the surgical consult and talk it over with one of them... who suggested that surgery is THE way to go... as have the handful of other patients that contacted me yesterday. One reason for that is that there could be outlying issues with my hip that have caused the tear (as is very common with autoimmune arthritis patients) and they can see that when they go in.

My rheumy was not happy with my decision, but it's also not her body. And, given the fact that they have my diagnosis listed incorrectly in the computer among other issues, I don't necessarily care as much what she thinks.

This surgery is a lot less frightening than the AVN one for a lot of reasons, but one being that it is really minimally invasive. It'll probably be a while before I can get in, but I think this is the way to go. My left hip has always been a problem joint for me and I really believe that this can help clear up a lot of those problems. At the very least, it'll help me eventually get off these narcotics I've been taking. I have to say, though, Zohydro is amazing. I can function on them mentally, whereas when I've been on the oxy drugs in the past, I just want to sleep and throw up. I'm back to feeling like an intelligent person, and that at least has been very helpful.

I probably would not have gotten Zohydro if it weren't for a very kind doctor that I saw at urgent care the Sunday after this pain started (Dec 21). He really paid attention to my allergies and wanted to give me something I would have a lower chance of reacting poorly to. He really took the time to go through everything with me, came over to the pharmacy with us, etc. And he was a newer doc! Younger docs tend to be more afraid of prescribing pain pills, so I was glad to see that he wasn't. Getting them filled at Walgreens was extremely easy as well and that was great because I was in so much pain and so tired. I honestly feel very blessed for how things went down that day.

When my rheumy refilled my Zohydro, though, the pharmacist at Walgreens was a total bitch. She asked questions in a way that didn't make sense to me, blew off my questions - even interrupting me as I was asking them, and had me stand up at the counter for 15 minutes with my cane while I was visibly in pain. She treated me like a pill seeker, and I remembered why I normally don't go to Walgreens. However, my insurance doesn't cover this medication and Walgreens has a discount program, so... I was kind of stuck... though next time, I may not go to the one by our apartment.

Want to learn more about the surgery? Check out Joan's blog, Life with a Flare, or Kenzie's blog, Life According to Kenz. They've been so helpful!

Tuesday, January 13, 2015

MRI Fun, Part One

Wednesday I had my first MRI and my second IV.

I hate IVs, but I have to say Tracy was a pro. Barely hurt and after a few minutes I could move my arm as much as I wanted.

I love that the NIH has so many pics on their site
Kudos to everyone who told me how freaking loud the MRI machine was because damn.

They didn't get me lined up right the first time, so they had to pull me back out of the machine and readjust everything, which meant going back into the hole again. The nice thing is that since this was of my hip I went in legs first... so I could at least pretend I wasn't really all the way in the MRI.

After about half an hour, it was time to pull me back out and administer the contrast. At this point, I was hella warm because I was nervous, cramped, and around all the magnets (duh). I had some rash pop up and they were nervous it was something they needed to be worried about. The nice thing, though, was that they were cool when I told them I just get a lot of rashes due to my disease. I think there was one more 'are you sure you're okay?' question before they sent me once more into the fray.

I know that those machines are small to begin with, but it definitely got me a lot more concerned about losing weight. I'm not a claustrophobic person but yikes.

Here's the bad guy we're looking for:

Check out that right side though. Yeowch. That's a little funky.

And I don't think this picture made the thought any better. Oy.

That was Wednesday night, and I still haven't heard anything yet. Honestly, a little frustration is popping up here. It's been four weeks with this pain coming up Thursday, and I'm a little miffed it's taking so long to get things going.

At least I got dinos!
Oh well. Bring on the results baby!

Monday, January 12, 2015

News Story Roundup & #cassandrachemo Twitter Chat Tonight!

If you're not following the facebook page, you're missing out on some great stories - and even better commentary!

There are also a couple of exciting things going on tonight! Obviously, the Oregon Ducks are going to win the National Championship.

There has been a story in the news recently about a 17 year old girl being forced to undergo chemotherapy by the state for her cancer. This girl is 8 months shy of 18, and her parents support her decision to go with alternative treatments. However, the court says Cassandra is not capable of making her own decisions due to having run away the first time she was forced to undergo treatments. You can read some of the back and forth on this over on my personal facebook page. There are also a few different links in the comments about this story.

Tonight, myself and Kelly Crab of Purple Project will be doing a Google Hangout at 5:30 Central time (6:30 ET or 3:30 PT) to discuss Cassandra's case. If you want to join in, you can also find us on Twitter. Kelly is at @girlsgotguts and I am at @kirstie_schultz. Please use the hashtag #cassandrachemo (it's long, but also not in use!).

Sunday, January 4, 2015

An Exciting Week

This week brings a lot of new exciting things for me.

It's back on Monday!!!
On Monday, I start my new job in pediatrics! I'm super excited!! Also, Gotham is back.

Theron and I get to go to see the Milwaukee Bucks Tuesday. We got some great seats, and I'm excited to yell out at the guys.

Then Wednesday night, I get to get my first MRI.

I saw my rheumatologist last week and she thinks I may have avascular necrosis (AVN) in my left hip. AVN is often caused by steroid use in those of us with autoimmune arthritis. To be honest, my pain fits in pretty well with what I've read described so I'm bummed about that... especially because it could mean more medications, staying away from steroids even more, and any one of a handful of surgeries.

This is not how I wanted to end 2014 and begin 2015.

The nice thing is that I'm working at the med school, so the people I work with will be much more understanding of the issues I'm facing. I'll also have to do a lot less walking, especially since I'm not working on a hill anymore.

I'm excited to figure out if this is for sure AVN or not, more so I can quit worrying about what else it could be.

That's how my exciting week is panning out. What interesting or new things are you up to this week?